Susan J Bartlett

Susan J Bartlett
McGill University | McGill · Department of Medicine

PhD

About

344
Publications
32,215
Reads
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11,363
Citations
Introduction
My research focuses on behavioural factors that affect health outcomes. I study how behaviour change (e.g., diet, exercise, smoking, taking medications regularly) and emotional wellbeing (stress, depression, anxiety) can help people with inflammatory arthritis and other chronic conditions feel and function better. I also evaluate ways to make medical care more patient-centred by collaborating with patient research partners, developing better patient reported outcome measures, and improving doctor-patient communication.
Additional affiliations
January 2008 - present
McGill University
Position
  • Professor
January 2008 - present
Johns Hopkins University
Position
  • Professor (Associate)
January 1998 - December 2007
Johns Hopkins Medicine
Position
  • Professor (Associate)

Publications

Publications (344)
Article
Background Systematic screening for depressive symptoms may identify patients who may benefit from clinical assessment and psychosocial support. Here we assess a 2-step screening using ultra-brief pre-screeners (Edmonton Symptom Assessment Survey-revised Depression Item [ESASr-D] or Patient Health Questionnaire-2 [PHQ-2]) followed by the Patient Re...
Article
Full-text available
Purpose The Rheumatoid Arthritis Flare Questionnaire (RA-FQ) is a patient-reported measure of disease activity in RA. We estimated minimal and meaningful change from the perspective of RA patients, physicians, and using a disease activity index. Methods Data were from 3- to 6-month visits of adults with early RA enrolled in the Canadian Early Arth...
Article
Background A growing number of studies indicate the considerable mental health impacts of the prolonged COVID-19 pandemic in the general population as chronic stress is a risk factor for the development of depression and anxiety. Mood disorders are more prevalent in RA and a history of anxiety or depressive disorders increases the risk of recurrenc...
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Objective: Systemic sclerosis (SSc) has significant psychosocial implications. We aimed to evaluate the proportion of participants in a large international SSc cohort who used mental health services in a 3-month period and to evaluate demographic, psychological, and disease-specific factors associated with use. Methods: Baseline data of particip...
Article
Background During the COVID-19 pandemic, Canadians with RA faced considerable uncertainty due to greater risk of infection, hospitalization, changing access to RA medications, and very limited access to in-person RA care. Further, to reduce transmission of the virus and COVID-related hospitalizations, stringent mitigation measures were implemented...
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Background Fatigue, a common symptom of rheumatoid arthritis (RA), is detrimental to health-related quality of life (HRQoL). We evaluated the impact of tofacitinib on fatigue, sleep, and HRQoL and explored associations between fatigue, related patient-reported outcomes (PROs), and disease activity in RA patients. Methods This post hoc analysis poo...
Article
Objective To generate initial data on the frequency and impact of symptomatic adverse events (AEs) associated with rheumatoid arthritis (RA) drug therapy from the patients' perspective. Methods We conducted an exploratory online survey asking patients with RA to indicate whether they currently or had ever experienced the 80 different symptomatic A...
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Objective: Adults with rheumatoid arthritis (RA) are at a higher risk for infections, including influenza and related complications. We identified influenza vaccination coverage in adults newly diagnosed with RA and examined sociodemographic RA characteristics and attitudes associated with vaccination. Methods: We used data from patients enrolle...
Article
Introduction: Rheumatoid arthritis (RA) is an autoimmune disease causing chronic inflammation of the joints. RA patients have increased risk of hypertension (HTN). The aim of this study was to determine prevalence of HTN at RA diagnosis as well as demographic, behavioral, and clinical characteristics associated with HTN. Hypothesis: We assessed the...
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Background The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled tria...
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PurposeThe Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools have not been evaluated in patients treated with renal replacement therapy.Methods Kidney transpla...
Article
Objective To examine the validity and reliability of the PROMIS Sleep Disturbance Item Bank Computer Adaptive Test (PROMIS-SD CAT) in patients on renal replacement therapy, using the Insomnia Severity Index as the primary legacy instrument. Methods Cross-sectional sample of adults on renal replacement therapy completed PROMIS-SD CAT, Insomnia Seve...
Article
Background and ObjectivePatients can express preferences for different treatment options in a healthcare context, and these can be measured with quantitative preference elicitation methods.Objective Our objective was to conduct a scoping review to determine how preference elicitation methods have been used in the design of clinical trials.Methods W...
Article
Background Pain is an important and detrimental feature of systemic sclerosis but is often overlooked or deprioritised in research and clinical care. Raynaud's phenomenon, arthritis, and cutaneous ulcers are among the commonly reported disease manifestations of systemic sclerosis that could be associated with pain. We aimed to assess levels of pain...
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Background Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low...
Article
Objective Meditation is a stress-reduction and contemplative technique that can improve emotional distress in people with chronic disease and may be especially beneficial for patients with rheumatic diseases. However, patient access to in-person programs is challenging. The goal of this pilot study was to evaluate the feasibility/acceptability asso...
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Objective To describe patterns of glucocorticoid use in a large real-world cohort with early rheumatoid arthritis (RA) and assess the impact on disease activity and treatment. Methods Data are from adults with new RA (≤1 year) recruited to the Canadian Early Arthritis Cohort (CATCH) and are stratified on the basis of whether a person was prescribe...
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Background Research on adherence interventions in rheumatology is limited by methodological issues, particularly heterogeneous outcomes. We aimed to describe researchers’ experiences with conducting interventional studies targeting medication adherence in rheumatology and their perspectives on establishing core outcomes. Methods Semi-structured in...
Article
We appreciate the interest in our manuscript concerning the Health Assessment Questionnaire disability index (HAQ) in an early rheumatoid arthritis incident cohort (the CATCH cohort) which predicted all‐cause mortality (1). We will clarify queries raised in letters to the editor (2‐4).
Article
Background: Pain is one of the most common symptoms affecting patients with systemic sclerosis, however, little is known about the relationship between self-efficacy and pain and changes in pain over time. Objectives: The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, a...
Article
Background Different tools are commonly used to assess fatigue in RA including single items (visual analogue (VAS), numeric rating (NRS), and Likert scales), SF-36 Vitality, and PROMIS. Evidence is needed to identify scores that reflect meaningful change to patients to interpret fatigue results in trials and for clinical care. Objectives To use sy...
Article
Background It is not well understood why hypertension (HTN) is so common in rheumatoid arthritis (RA) patients. Reported prevalence of HTN in RA patients ranges from 4-73%.(1) Objectives This study explored the prevalence of HTN at time of RA diagnosis and which demographic, behavioural and clinical factors were associated with HTN. Methods Data...
Article
Background RA is an inflammatory disease that results in pain and loss of function, especially in the hands and wrists. Brief self-assessment tools that can reliably and precisely quantify hand/wrist function are needed to assess inflammatory activity when a physical exam is not feasible and to capture day-to-day experience of living with RA. Neuro...
Article
Background The RA-FQ is a patient-reported measure of current disease activity in RA that can be used to identify disease flares. The RA-FQ queries pain, physical function, fatigue, stiffness, and participation and yields a score from 0-50. We previously reported on reliability, validity, and responsiveness. Objectives To identify changes in RA-FQ...
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Objective To describe the perspectives of patients with inflammatory arthritis (IA) on outcome domains of trials evaluating medication adherence interventions. Methods Adult patients (≥18 years) with IA using disease-modifying anti-rheumatic drugs (DMARDs) from centres across Australia, Canada, and the Netherlands participated in six focus groups...
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PurposeThe PACIC assesses key components of the Chronic Care Model. The purpose of this study is to examine the dimensionality and psychometric properties of the PACIC.MethodsA convenience sample of 221 adults in Canada who self-identified as living with one or more physical and/or mental chronic diseases was invited to participate via an online su...
Article
Objectives: To understand the perspectives of patients and rheumatologists for tapering DMARDs in RA. Methods: Using semi-structured interview guides, we conducted individual interviews and focus groups with RA patients and rheumatologists, which were audiotaped and transcribed. We conducted a pragmatic thematic analysis to identify major themes...
Article
Background No trials have tested multifaceted mental health interventions recommended by public health organisations during COVID-19. The objective of this trial was to evaluate the effect of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program on anxiety symptoms and other mental hea...
Preprint
Full-text available
Purpose The Rheumatoid Arthritis Flare Questionnaire (RA-FQ) is a patient-reported measure of disease activity in RA. We estimated minimal and meaningful change from the perspective of RA patients, physicians, and using a disease activity index. Methods Data were from 3- and 6-month visits of adults with early RA enrolled in the Canadian Early Arth...
Article
Objective To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions. Methods The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain...
Article
Objective: To support physical activity among people with systemic sclerosis (SSc; scleroderma), we sought to determine the (1) prevalence and importance of barriers and (2) likelihood of using possible facilitators. Methods: We invited 1,707 participants from an international SSc cohort to rate the (1) importance of 20 barriers (14 medical; 4 s...
Preprint
Full-text available
Purpose: The Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools has not been evaluated in patients treated with renal replacement therapy. Methods: Kidney trans...
Article
Objectives Using patient-reported outcomes (PROs) to inform clinical decision-making depends on knowing how to interpret scores. Patient-Reported Outcome Measurement Information System® (PROMIS®) instruments are increasingly used in rheumatology research and care, but there is little available to guide interpretation of scores. We sought to identif...
Article
Introduction No studies have examined factors associated with fear in any group of people vulnerable during COVID-19 due to pre-existing medical conditions. Objective To investigate factors associated with fear of consequences of COVID-19 among people living with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scl...
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Introduction No studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations. Objective To compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes. Methods Pre-COVID-19 Scleroderma Patient-centered Intervention Network...
Article
Objective Fear associated with medical vulnerability should be considered when assessing mental health among individuals with chronic medical conditions during the COVID-19 pandemic. The objective was to develop and validate the COVID-19 Fears Questionnaire for Chronic Medical Conditions. Methods Fifteen initial items were generated based on sugge...
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Background The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, began to implement routine symptom screening with the Edmonton Symptom Assessment System (ESAS) for ambulatory cancer patients. Havi...
Article
Background Rheumatoid arthritis (RA) is chronic, painful, disabling condition resulting in significant impairments in physical, emotional, and social health. We used different methods and perspectives to evaluate the responsiveness of PROMIS® short forms (SFs) and identify minimal and meaningful score changes. Methods Adults with RA enrolled in a...
Article
Objectives: Higher self-reported disability (high HAQ) has been associated with hospitalizations and mortality in established RA but associations in early RA (ERA) are unknown. Methods: ERA patients (symptoms <1 year) enrolled in the Canadian Early Arthritis Cohort (CATCH) who initiated DMARDs and had completed HAQ data at baseline and 1 year fo...
Article
Background: Residual fatigue occurs in early RA (ERA) patients in remission. Objective: To examine the relationship between disease activity and fatigue over time in ERA. Methods: Data were from patients with early RA (symptoms ≤12 months) enrolled in the Canadian Early Arthritis Cohort (CATCH). Patients rated their fatigue over the past week...
Preprint
Full-text available
Background: No studies have reported comparisons of mental health symptoms prior to and during COVID-19 in vulnerable populations. Objectives were to compare anxiety and depression symptoms among people with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scleroderma), including continuous change scores, proportion...
Article
Background RA patients with inadequate DMARD response may be treated with a TNF inhibitor (TNFi), non-TNFi or janus kinase inhibitor (JAKi) [1]. Objectives Compare characteristics of real-world early RA (ERA) patients starting TNFi, non-TNFi, and JAKi post DMARD failure. Methods Data were analyzed from early RA patients (symptoms < 1 year) enroll...
Article
Background Non-articular pain (NAP) can co-exist with synovitis in RA. Its presence is associated with higher pain and worse function per legacy patient reported outcomes (PROs) both of concern to people with RA. It is not known if the presence of NAP significantly changes PROMIS 29 health domains. Objectives To determine if co-existing NAP (both...
Article
Background Stress is implicated in RA onset and poorer prognoses through changes in neuro-endocrine and autoimmune function. Although many people with RA link disease onset to recent stressful life events, results from retrospective studies are unclear. Objectives To describe the incidence of major stressors (+STRESS ) in year prior to diagnosis...
Article
Background Several composite RA disease activity indices are commonly used in clinical practice and research. Different disease activity indices however can be inconsistent in classifying remission (REM). Objectives 1) Compare remission prevalence across 4 common RA indices; 2) compare changes in remission across indices; and, 3) Identify predicto...
Article
Background Medication non-adherence is a significant problem among patients with rheumatic diseases. Research on adherence interventions in rheumatology is limited and disappointing, with studies using heterogeneous outcomes. Understanding these limitations is needed to inform the design of better interventions and research studies. Objectives To...
Article
Background Persistent pain can occur in early RA patients, despite improvement in synovitis and may be due to coexisting non-articular pain (NAP). Though NAP is often attributed to fibromyalgia and widespread NAP, regional NAP syndromes may be more common and under-recognized. Objectives To describe patterns of NAP, predictors of persistent NAP an...
Article
Background Early diagnosis and rapid initiation of DMARDs following a treat-to-target approach have made remission a realizable goal for many with RA. Yet, some patients are unable to sustain remission over time. Objectives To describe longitudinal patterns of remission and identify predictors of sustained vs transient remission in real-world earl...
Article
Background Patients with RA are at greater risk of mortality than the general population. Higher HAQ disability has been associated with hospitalizations and mortality in established RA; whether HAQ disability predicts mortality in early RA (ERA) is unknown. Objectives The objective of this study is to analyze how well the HAQ can predict future m...
Article
Background Although DMARDs are essential for early aggressive control of RA to reduce symptoms and disability, medication adherence is variable. Beliefs about the necessity of medications and safety concerns predict adherence and are modifiable. Objectives To examine associations among RA medication necessity beliefs and concerns, sociodemographic...
Article
Objective To estimate, among people with multiple sclerosis, the extent to which a personally tailored exercise programme (MSTEP©) resulted in greater improvements in exercise capacity and related outcomes over 12 months in comparison with general exercise guidelines. Design Two-group randomized trial. Subjects Ambulatory and sedentary. Interven...
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Full-text available
Objective Contagious disease outbreaks and related restrictions can lead to negative psychological outcomes, particularly in vulnerable populations at risk due to pre-existing medical conditions. No randomised controlled trials (RCTs) have tested interventions to reduce mental health consequences of contagious disease outbreaks. The primary objecti...
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Full-text available
Purpose: People with systemic sclerosis (scleroderma) face difficulties being physically active. This study identified physical activity barriers and facilitators experienced by people with scleroderma. Materials and methods: We conducted nominal group technique sessions with scleroderma patients who shared physical activity barriers, barrier-speci...
Article
Objectives: We explored the burden of symptoms of anxiety and depression on health-related quality of life (HRQL) in patients with rheumatoid arthritis (RA). Methods: Adults with RA participating in an observational cohort completed PROMIS tests of depression, anxiety, fatigue, physical function (PF), pain interference (PI), sleep disturbance, a...
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Background: Patient-reported outcomes (pros) are essential to capture the patient's perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supportin...
Article
Objective: The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) is validated for measuring fatigue in rheumatoid arthritis (RA). However, 10 of 13 FACIT-F items are identified as relevant to RA patients. The Patient-Reported Outcomes Measurement Information System® (PROMIS® ) uses an item response theory (IRT)-calibrated T-score...
Article
Objective: Non-adherence to medications is common in rheumatic conditions and associated with increased morbidity. Heterogeneous outcome reporting by researchers compromises the synthesis of evidence of interventions targeting adherence. We aimed to assess the scope of outcomes in interventional studies of medication adherence. Methods: We searc...
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Full-text available
Background: Fatigue is prevalent and impactful in rheumatoid arthritis (RA). There is no standardized measure for its assessment nor data concerning the performance of PROMIS-Fatigue short forms (SFs) in people with RA. We evaluated the construct validity of 4-, 7-, and 8-item PROMIS-Fatigue SFs in RA patients across the range of disease activity....
Preprint
BACKGROUND Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HR...
Article
Background: Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (...
Article
Full-text available
Objective Early rheumatoid arthritis (RA) treatment requires timely recognition. This large, multicentre study compared patient-reported vs physician-reported onset of early RA. Methods Patients from the Canadian Early ArThritis CoHort with early/suspected RA (persistent synovitis <1 year) completed questionnaires asking about the date of symptom...
Article
Objective: To evaluate the impact of integrating patient-reported outcomes (PROs) into routine clinics, from the perspective of patients with RA, clinicians and other staff. Methods: We conducted a prospective cohort study using a mixed methods sequential explanatory design at an academic arthritis clinic. RA patients completed selected Patient-...
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Background: This multicenter incident cohort aimed to characterize how often early rheumatoid arthritis (ERA) patients self-report episodic joint inflammation (palindromic rheumatism) preceding ERA diagnosis and which characteristics differentiate these patients from those without prior episodic symptoms. Methods: Data were from patients with ea...
Article
Full-text available
Objectives The Scleroderma Patient-centered Intervention Network (SPIN) Cohort uses the cohort multiple randomised controlled trial design to embed trials of online self-care interventions for people living with systemic sclerosis (SSc; scleroderma). To offer interventions to patients interested in using them, participants complete signalling items...
Preprint
BACKGROUND Ensuring care is patient-centered can be particularly challenging in spinal cord injury (SCI). Due to the sudden onset and variable severity, people with SCI often experience a wide range of limitations and secondary complications that evolve over time. Patient-Reported Outcomes (PROs) offer a primary way of monitoring secondary complica...